One of the stranger challenges of living with a brain injury, that no one talks about, because no one can identify it, is that we become a complete mystery to ourselves. So much is wrong with us, it is like a big tangled web of yarn, one piece indiscernible from the next, with no way to make sense of the mess. Someone without brain issues would be incapable of figuring it out; but we get the added challenge of the thick cognitive fog.
Unable to figure out ourselves, we rely heavily upon our doctors to explain "us" to us. We are thus more susceptible to believing what our doctors say.
Then countless doctors tell us nothing is wrong with us, perhaps because they do not have the tools to see it. They lead us to believe we are crazy or lazy. So we become ashamed of our inabilities; sensing no other option but to hide our heads in the sand for the rest of our lives. Somehow, doctors so often add to our tangled TBI mess of yarn, making us more confused and depressed. This is a big topic in support groups. Painfully familiar, it seems we all have the same doctor.
I am a mental health professional and an emotionally healthy person. And I am about to make some scary disclosures. For all of us, this story needs to be told.
I really wanted to know why after four years of working with my state’s vestibular specialist, I have "the most persistent case of dizziness"she has ever seen, and nothing is helping. Motion can still feel like it shakes my brain into a million pieces and renders me useless. I wanted to know why I now spend my life trying to figure out how to empty a dishwasher with as few heads turns as possible before I have to rest. I wanted to know why I have to sit still for several hours each morning before I can use my eyes, read, ride in a car, or move. Anyone who thinks I want to lay on a couch and watch TV with my life, does not know me.
I wanted to know why my eye constantly hurts so badly and feels as if the ligaments are being pulled out of place and can not tolerate light. Why does everything appears to bounce? Why did I spend 3 years seriously wishing I were blind because my vision made me so horrified, sick, unable to move, and brain fatigued?
The first neurologist I saw told me “Nothing is wrong with your brain. You just have anxiety problems". That is why you could only name 6 words that start with “F”". (He might be anxious too if that were him.)
After my first four hour neuro-opthamological (brain/vision) exam, the doctor said ""You just need eye drops, your eyes hurt because they are dry." Huh?! He continued, "There is nothing wrong with your eyes.” I asked “It's the brain part of vision where the problems lie, isn't that why I am seeing a neuro-opthamologist?” His reply? “Well, there is nothing we can do about the neuro part.” (I'm confused. Then why did I just waste four traumatizing hours?!)
The second neuro-opthamologist said "You have 20/15 vision. There is nothing wrong with your eyes. I would kill to have your vision". (Honestly, I was ready to kill myself because of my vision.)
The next one said "You should learn to meditate". (I have meditated and practiced yoga for 30 years. I have taught meditation. I can't move and feel like I just spent 5 years on meditation retreat. He was talking to the wrong person.)
All of these docs were adding insult to injury. The problem is, that we have brain injuries. We believe our doctors. Without the ability to think critically, we are left more confused than ever.
The fourth out-of-state neuro-opthamologist said “You have a damaged optic nerve, possibly causing the severe eye pain. Oh! This is bad, you see two floors. Nothing we can do about it. You can try prisms, but better get used to it.” ...Slowly getting somewhere.
I thought the problem was Podunk health care in rural Vermont. So I went to a highly recommended Big City neurologist. I was hopeful. I am always hopeful... til I get kicked in the gut again. That visit wielded my favorite line: "Your issues are too significant for someone who show no damage on an MRI." Long pause... "Have you seen a psychiatrist?".
(Everything written about mild TBI says it does not show up on an MRI. How does a neurologist not know that?! I really would like to know the answer to that.)
The amount of ignorance around brain injuries is shocking. Survivors know it is physical, yet we are treated as if it is psychological. Would anyone with a broken bone have to go through this? Many people with TBI finally end up in psychiatric wards. Although much has been discovered in the last few years, my theory is that our doctors were all trained 10, 20, 30, 40 years ago. They still don't get it.
Desperate for help, I followed the recommendation and went to a psychiatrist. I was beginning to think maybe I was crazy.
The psychiatrist said "You have the classic traumatic brain injury. Doctors see you sitting in a quiet office for 10 minutes. They don't see it or understand it. That is so classic! You lose your career, you lose your relationship, you cant’ walk or drive, and doctors don’t believe the severity. They think it is a somatoform disorder. It is a part of every TBI story. You are a mental health professional. You could help others understand this. You should write a book.” (I am.)
My unsinkable persistence has paid off and I finally have a diagnosis. There are names for this! It really is as hard as it feels.
After a relentless, nearly five-year, nationwide search, I finally found the right doctor. Dr. Laurie Chaikin specializes in visual rehabilitation after TBI and stroke. She says I have one of the worst, and most complicated vision and vestibular issues she has ever seen. (How did I get so special?)
Here is the answer to my quest: (If you have a TBI, these names may be helpful to you)
Drum roll please.......
- I have Cyclo-torsion, means my eyes roll around independently on their axis.
- I have hyper-deviation, which means when I look left, my left eye moves up and the right moves down.
- I have reverse hyper-deviation, which means when I look right, the right eye goes up and the left goes down. Going all the way from left to right (to scan a grocery store aisle, empty a dishwasher, or cross the street for example), is really difficult... usually impossible.
- Exotropia, means that my eyes are pulled apart from each other and are constantly in pain. I see one and a half overlapping images of everything, which is why I could never answer if I see single or double. Conversion, or fusing them together (to make eye contact or read for example), takes a tremendous amount of exhausting work, but is getting easier after years of exercise. My eyes keep scanning and do not ever focus on one spot.
- Oscillopsia causes everything to appear to bounce. When I walk, there are 2 bouncing floors, one that used to be at my knees and one at my feet.
- Visual motion sensitivity means if anything internally or externally around me moves, including my head or eyes, I have no idea where my body is in space.
- Alpha-omega pupils, mean when the light changes, (like passing trees or columns in the sun) rather than dilating, my pupils get all confused and open/shut/open/shut/open/shut, flickering and making my brain shut down and creating partial seizures.
- Central vision allows you to focus and peripheral vision allows you to understand motion and know where you are in space. With a brain injury, they do not communicate with each other as that pathway is broken. Usually, I have no peripheral vision. (It is a bit like looking through binoculars all the time, and if you have ever done that, you know it is not possible to walk down a street easily with binoculars on. You will be sick in no time.)
I can not tell you what a gift it is for an injured brain to finally understand itself!
Truth is power. Truth sets us free. I am now free of self-doubt, self-criticism, and the anxiety of living with the unknown. Finally, I have something other than quicksand to stand on. I could not stand on falsehoods, but I can stand on Truth. After unraveling enough of the tangled mess of yarn that my brain has become, I can start figuring out how to build a life with what I have left.
If you are dealing with a TBI or any health issue, you need to advocate for yourself. No professional will care about you more than you do. If you can not, ask family, friends, or professionals for help. TBI is primarily a physical problem not a psychological one. If you don't get the answers you need, keep looking!
Never give up. Never give in. This gift of your life is too precious.
If you have a TBI, and you have a doctor who gets it, please share their name and location in the comments below, we need to start a nationwide list. Thank you!
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